The implications for social care of the Disability Equality Duty A paper prepared for the Disability Rights Commission. Jenny Morris September 2005.

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1 The implications for social care of the Disability Equality Duty A paper prepared for the Disability Rights Commission Jenny Morris September The paper is organised under the headings set out in the contract commissioning the work. Contents 1. Public authorities In England, Scotland and Wales concerned with arranging social care support and what the disability equality duty means for them The meaning of social care List of Public Authorities England Scotland Wales England, Scotland and Wales What does the DED mean for these public authorities? Equality of access to social care services 14 a. Equality of access in comparison with non-disabled people b. Equality of access between different groups of disabled people c. Equality of access to policies and services that promote independent living The role of social care services in enabling equal access to and participation in society How the duties complement and build on gaps in current legislation, policy and guidance in England, Scotland and Wales relevant to the provision of social care support, to deliver on promoting disability equality and Independent Living for disabled people Disability equality, independent living and social Inclusion In what ways does the social care system currently fall

2 short in terms of delivering disability equality and independent living? How could the DED complement and build on the gaps in the current social care framework Examples of what the duties might mean in practice for different public authorities and Local Authorities with Social Services responsibilities in particular Duty to Proactively eliminate discriminatory practices, 24 policies and procedures 3.2. Duty to ensure equal access to and participation in society of disabled people Increasing take up of direct payments amongst underrepresented groups Involving disabled people in the development and implementation of policy Involving disabled people in the regulation and inspection of social care Impact assessments and social care Measuring performance on delivering improved outcomes for disabled people in relation to independent living Cross governmental aims and outcome measures Social Justice Indicators of Progress (Scotland) Public Service Agreements and Local Public Service Agreements (England) The Performance Assessment Framework (England) National Outcomes and Local Improvement Targets for the Joint Future Agenda (Scotland) Policy Agreements and the Performance Measurement Framework (Wales) Best Value Performance Indicators Service standards Broad outcomes set by social care organisations What type of outcome measures would enable public authorities to assess progress on independent living? Research on independent living Current work by public authorities on promoting disability equality and independent living 47 1

3 Consultations with service users about what they want from social care services Implications of the DED for the methodologies of performance measurement, inspection and regulation Are current indicators are appropriate and adequate measures of independent living? Involvement of disabled people Information needed Challenges which the DRC may need to address when producing guidance for relevant public authorities Organisations which have already written diversity or equality strategies and/or disability action plans may feel they have already covered disability equality The invisibility of social care Outcome measures are not easily available Some social care policy areas are not generally included when discussing disability policies and yet have important implications for some disabled people s lives The consequences of social care organisations failing disabled people can be devastating but it may not be easy to prove a causal relationship Social care organisations are likely to be dependent on the actions of other bodies to deliver some of their equality targets Definitions The health and social care divide Organisationally it is becoming more difficult to separate out responsibility for social care Tensions between promoting disability equality and rationing of scarce resources Identifying what social care policies and practices promote independent living can be quite complex The goal of choice and control is vulnerable to being hijacked by the political agenda on choice in public services Some key organisations are arms length bodies Recommendations on priority areas for the DRC to focus its influencing and promotion work on the DED in the social care sector Social care and older people 60 2

4 6.2 Disabled children with significant additional needs Implementation of Improving Life Chances and the forthcoming Joint White Paper Social care services which are predominantly used by non-disabled people Children and family support services Support services to asylum seekers Domestic violence services Drug and alcohol treatment services The social care needs of disabled people in the criminal justice system 67 References 68 3

5 1. Public authorities In England, Scotland and Wales concerned with arranging social care support and what the disability equality duty means for them 1.1 The meaning of social care Before listing the public bodies concerned with social care support it is necessary to identify what is meant by this term. The main formal sources of defining social care are the statutes, guidance, legal judgements and local protocols that, in England and Wales, distinguish social care from health care, and, in Scotland, distinguish social care from personal care. The distinction is necessary because, in England health care is free at the point of delivery whereas social care is not. In Scotland, personal care is free like health at the point of delivery, but social care is not. In Wales, a manifesto commitment to abolish charging for social care has been followed by wrangling over definitions of social care, and attempts to follow the Scottish route of only making personal care free at the point of delivery. Traditionally, health and social services authorities across all three countries have also used distinctions between health and social care in attempts to limit demands on their budgets. The later discussion in this paper on continuing care criteria is relevant here. However, increasingly organisations responsible for services in the community (both health and social care) are forming organisational partnerships 1 : in England and Wales this has mainly happened in terms of community services for people with mental health problems and people with learning disabilities (although there are also some partnerships covering services to older people); in Scotland Community Health and Social Care Partnerships are being set up by Health Boards and Social Work Departments. 1 What is meant here is more than the joint strategies which, for example, are written by Local Strategic Partnerships in England or the Health, Social Care and Well Being strategies by the 22 Local Health Boards and local authorities in Wales. The Health Act 1999 made it possible for local health and social services in England and Wales to work together in three different ways (all of which had previously been hampered by existing legislative and regulatory frameworks): pooled budgets where health and social services pool local budgets to meet needs; lead commissioning where one organization delegates its responsibilities and funding to another organization to meet needs; integrated provision where two organizations jointly provide a service. Subsequent legislation (the Health and Social Care Act 2001) set up Primary Care Trusts to commission local health services and increased the opportunities for joint funding and joint working. In Scotland, Community Care: A Joint Future, published in 2000, set out the framework for joint working, followed by Reinvigorating the Joint Future Agenda in

6 In another context, attempts have also traditionally been made to distinguish social care needs from education needs when parents or professionals make the case for out of authority and/or residential placements for disabled children and young people. In these cases, the primary motivation is to reduce the call on education or social services budgets (see Abbott et al, 2000). There have also been disputes between health and education services as to the funding responsibilities for services such as physiotherapy when delivered in a school setting. However, recent developments in children s services 2 are also leading to organisational partnerships across health, social care and education. These developments include, in England, the shift in responsibility for children s social care from the Department of Health to the Department for Education and Skills; Children s Trusts and the appointment of Directors of Children s Services; Sure Start; the policies on extended schools and children s centres. The DRC s Policy Statement on Social Care and Independent Living states that The term 'social care' covers all practical support provided in community and residential settings. However, the lines between practical support which is health care and that which is social care can become blurred when delivered in a nonhospital setting: for example, cleaning a wound can be designated as health care but dressing it can be designated as social care the issue in contention is which organisation pays for these tasks and (sometimes) which type of worker has the relevant skills. For disabled children and young people in education settings, the distinction between practical support (social care) and learning support (education) can also be contentious. Social care is not necessarily a term that makes sense either to individual disabled people or within an independent living perspective. Caroline Glendinning s research, for example, found that disabled people using direct payments did not distinguish between health and social care, but saw both as part of their overall personal care needs (Glendinning, 2000). Personal care is not an appropriate way of defining social care however, as it does not include the practical support that takes the form of equipment or adaptations. Neither does it include advocacy or 2 Following Every Child Matters and the Children Act 2004 in England, Children and Young People: A Framework for Action in Wales and For Scotland s Children, in Scotland. 5

7 self-advocacy support, or communication support. Such practical support is key to independent living for many disabled people. For the purposes of this paper, the DRC s definition of social care will be used, encompassing both personal care and other forms of practical support. However, the mechanisms which make a formal distinction between health and social care, and social care and education support, are part of the context to the implementation of the Disability Equality Duty, and will therefore be discussed at relevant points in this paper. If the DRC was to take a wider definition of social care than that commonly found within the disability agenda, we would need to also include services such as Supporting People, which although they are key to some disabled people s opportunities for accessing independent living are mainly used by people who do not come under the DDA definition. We might also include services, such as accommodation and support services to people fleeing domestic violence, which are focussed primarily on needs that have nothing to do with the experience of impairment or mental health, but which may be important sources of practical support provided in community and residential settings to disabled (and non-disabled) people. This broader definition of social care has been used when listing the public authorities, and relevant policy areas, below. 1.2 List of Public Authorities The following public authorities are concerned with social care support: England Government departments Department of Health Relevant policy areas: - National Service Frameworks: older people; mental health; children; long-term conditions - Adult Social Care Green Paper - Health and Social Care White Paper (forthcoming) 6

8 - Improving Life Chances of Disabled People (cross departmental) - Community care, including direct payments - Fair Access to Care Services: Policy and Practice Guidance - Continuing Care guidance and forthcoming National Framework - Protection of Vulnerable Adults - National Carers Strategy - Fairer Charging policy - National Care Standards - Sure Start (cross departmental) - National Drugs Strategy - Domestic violence Office of the Deputy Prime Minister Relevant policy areas: - Supporting People - Housing renewal and adaptations - Local authorities - targets, equality standard, etc - Sustainable Communities national homelessness strategy - Domestic violence. Department for Education and Skills Relevant policy areas: - Every Child Matters - National Service Framework for Children, Young People and Maternity Services - Sure Start (cross departmental) - Improving Life Chances of Disabled People (cross departmental) Children s Commissioner for England. Home Office Relevant policy areas: - substance abuse: Drugs Strategy Tackling Drugs to Build a Better Britain - domestic violence: Safety and Justice. National agencies NHS National Treatment Agency for Substance Misuse Care Services Improvement Partnership (previously within DH, now commissioned by DH) 7

9 - Valuing People (the National Learning Disability Strategy) - National Institute for Mental Health in England - Change for Children - Health and Social Care Change Agent Team - Integrated Care Network - Integrating Community Equipment Services - The National CAMHS Support Service (NCSS) - Health in Criminal Justice.?Independent Living Funds?Social Care Institute for Excellence Regulation and Inspection bodies Audit Commission Commission for Healthcare Audit and Inspection Commission for Social Care Inspection National Audit Office Ofsted (leads on the new Framework for the inspection of children s services)?general Social Care Council Ombudsman Local Government Ombudsman Local public bodies Councils with social services responsibilities (CSSRs) 3 - Adults services - Children s services Children s Trusts Care Trusts Primary Care Trusts (see discussion re overlaps with health care responsibilities). Training and Qualification bodies?skills for Care 4 3 Councils with Social Services Responsibilities is a legal term relating to the Local Authority Social Services Act 1970 and is not a term used colloquially. It refers to local authorities across the United Kingdom who have social services responsibilities (for children and/or adults). It is used in this paper as a convenient term to cover a range of local authorities which may be called different things (Social Work Departments in Scotland, Children s Services Authorities in England for example) but which all have the same legal status. 4 Skills for Care and the Children s Workforce Council were previously known as TOPSS 8

10 ?Children s Workforce Council Voluntary and private sector organisations delivering services commissioned by public bodies Scotland Scottish Executive Health and Community Care Department Education Department Environment and Rural Affairs Department Communities Scotland Children and Young People s Commissioner Relevant policy areas: - Fair Care for Older People - The Same as You (National Learning Disability Strategy) - Joint Future Agenda - For Scotland s Children - Direct Payments Scotland - Improving Life Chances of Disabled People - National Care Standards - Protecting Vulnerable Adults - Supporting People - Homelessness Task Force Agenda - National Drugs Strategy/Getting Our Priorities Right - Preventing domestic abuse: a national strategy - Sure Start Scotland Regulation and Inspection Scottish Social Services Council Care Commission Social Work Services Inspectorate Audit Scotland Social Work Inspection Agency HM Inspectorate of Education, Services for Children Unit (has child protection responsibility) Ombudsman Public Services Ombudsman 9

11 Local bodies Councils with Social Services Responsibilities 5 Health Boards 6 NHS Trusts Training and Qualification bodies Scottish Social Services Council?Scottish Institute for Excellence in Social Work Education Voluntary and private sector organisations delivering services commissioned by public bodies Wales National Assembly for Wales/Welsh Assembly Government: Health and Social Services Department Children and Families Directorate Children s Commissioner for Wales Relevant policy areas: - Wales: A Better Country - Designed for Life 10 year strategic plan for health and social care. - Fulfilling the Promises (National Learning Disability Strategy) - A Strategy for Older People in Wales - National Service Frameworks: older people; mental health; children - Children and Young People: A Framework for Partnership - Children and Young People: Rights to Action - Fair Access to Care Services - Fairer Charging policy - Improving Life Chances of Disabled People - National Care Standards - Protection of Vulnerable Adults - Housing renewal and adaptations - National Homelessness Strategy - Supporting People 5 Councils with Social Services Responsibilities is a legal term relating to the Local Government Act 1970 and is not a term used colloquially. It refers to local authorities across the United Kingdom who have social services responsibilities (for children and/or adults). 6 Health Boards and CSSRs (Social Work Departments) are currently setting up Community Health and Social Care Partnerships. 10

12 - National Housing Strategy - National Drugs Strategy - Tackling Domestic Abuse: The All Wales National Strategy - Cymorth: the Children and Youth Support Fund (incorporating Sure Start Wales) National agencies Wales Office for Research and Development for Health and Social Care (WORD) Local Government Data Unit Regulation and Inspection bodies Care Council for Wales Audit Commission in Wales Care Standards Inspectorate for Wales Social Services Inspectorate for Wales Ombudsman Public Services Ombudsman for Wales Local bodies Councils with Social Services Responsibilities 7 Health Boards (NB CSSRs and Health Boards are developing Health, Social Care and Well-Being Strategies.) NHS Trusts Training and Qualification bodies?skills for Care?Children s Workforce Council? Health Professions Wales Voluntary and private sector organisations delivering services commissioned by public bodies England, Scotland and Wales 7 Councils with Social Services Responsibilities is a legal term relating to the Local Government Act 1970 and is not a term used colloquially. It refers to local authorities across the United Kingdom who have social services responsibilities (for children and/or adults). 11

13 HM Treasury Relevant policy areas: - spending reviews - Public Service Agreements and Performance Targets. DWP Relevant (cross-departmental) policy areas: - Opportunity Age (Older People s Strategy) - Improving Life Chances of Disabled People. Home Office - asylum seekers and refugees. National Asylum Support Service - provision of accommodation and support to asylum seekers who would otherwise be destitute. Skills for Care and Development: UK wide Sector Skills Council for Social Care Health and Safety Commission Health and Safety Executive 1.3 What does the DED mean for these public authorities? The focus of this paper is on public authorities as policy makers and providers of social care, rather than as employers. Obviously they will have responsibilities as employers to fulfil the disability equality duty. These duties are not included in this paper. The duty requires authorities to proactively eliminate discriminatory practices, policies and procedures, to eliminate barriers and to ensure equal access to and participation in society of disabled people (DRC 2004, para 1.7). For example, a local authority might find that take-up of direct payments which have been shown to be a more effective way of enabling people to participate in society 8 than community care services - is particularly low among mental health system users or disabled people from ethnic minority communities. Effective strategies to increase takeup on a par with other groups could be achieved by working 8 This is to leave unanswered for the moment the question of what participation in society looks like. It is nevertheless a question which will need to be addressed in the development of the Guidance. 12

14 together with mental health teams in NHS Trusts and community groups to increase awareness of the purpose and availability of direct payments and how to access this resource. 9 Social care services have a particular importance in promoting equality of opportunity for disabled people as many people require personal assistance, equipment, communication support and/or advocacy in order to have equal access to employment, education and training, family and community life, leisure activities and to society in general. This importance is reflected in the DRC s Policy Statement on Social Care and Independent Living: The Disability Rights Commission believes that social care services can help secure equality and participation of disabled people by providing support that promotes independence and social inclusion and enables choice and control for all disabled people. Social care services also have a role in protecting children and vulnerable adults from harm, and this role would also be covered by the DED. In respect of this role, a key question will be to what extent protection becomes limitation of opportunities. Guidance could assist social care organisations to take a more empowering approach to this aspect of their role than is often currently the case. Social care support services for people experiencing domestic violence, homeless people, drug treatment or asylum support services will also play a key role in enabling some disabled people to experience equality of opportunity. The DED applies to public authorities involved in social care in two main ways: equality of access to social care services, particularly to those that enable independent living: i.e. public bodies should proactively eliminate discriminatory practices, policies and procedures to ensure equal access to services the role of social care services in enabling equal access to and participation in society: here the issue is more what kind of outcome for disabled individuals (and groups of individuals) is achieved by the services provided. 9 This example was given by Gerry Zarb in his comments on the draft paper. 13

15 1.3.1 Equality of access to social care services There are three elements to this aspect of the DED that can be identified as relevant to social care services. a. Equality of access in comparison with non-disabled people There are some social care services used both by people who do not come within the DDA definition of disabled person and by those who do. They are: Supporting People services are mainly targeted at people who have relatively low levels of social care needs, most of whom therefore would not come within the DDA definition. There is some evidence that the implementation of Supporting People is not meeting the needs of people with the most complex needs (Watson et al 2003). Amongst these will be people who come within the DDA definition of disabled person. Services for carers: An important section of social care services are aimed at supporting people who provide significant amounts of support to a disabled friend, family member or neighbour. The 2001 Census found that, of the nearly 2 million people aged who were recorded as permanently sick or disabled, almost 273,000 provide some unpaid care for other people (this is 5% of all carers) and 105,000 provide 50 or more hours care (10% of all carers). Social care policies and services concerned with carers will need to address the access requirements of disabled carers. Children and families support services are intended to assist parents to look after their children. There is some evidence that such services do not adequately support and are not appropriately accessible to parents with learning disabilities. The children of parents with learning disabilities are overrepresented amongst children subject to care orders and other child protection proceedings. For example, a study on care orders found that 25% of the children involved had a parent with a learning disability (Harwin et al, 2001). Another study on child protection applications to family courts found that 15% involved a mother and/or father with learning disabilities (Booth et al, 2003). Only 2.5% of the population 14

16 have mild to moderate learning disabilities (Department of Health, 2001, p.15). Apart from possible discriminatory practices within the family court system, here the issue is whether children and families support services discriminate against parents with learning disabilities. Sure Start, a government programme which runs in England, Wales and Scotland. It brings together early education, child care, health and family support to deliver the best start in life for every child. It funds local programmes and Children s Centres throughout each country: for example there is a commitment to provide 3,500 children s centres in England by The government has recognised that there is a need to evaluate whether the programme is adequately addressing the needs of disabled children and their families (Prime Minister s Strategy Unit, 2005, Recommendations 5.2 and 5.3). Substance abuse services: although there is limited UK evidence, a US study found drug and alcohol abuse to be higher amongst disabled people than non-disabled people (Substance Abuse Resources and Disability Issues, n.d.). Yet a literature review carried out for the National Treatment Agency (in England) found some indication that substance abuse services are not always accessible to people who have physical and/or sensory impairments and/or learning disabilities (Dyter and Mitchell, 2003). The Scottish Executive s recent publication, Getting Our Priorities Right, which sets out policy and practice guidelines for working with families affected by problem drug use, mentions the particular needs of disabled children whose parents use drugs. However, it contains no acknowledgement that some drug-using parents may also have physical and/or sensory impairments and/or learning disabilities, although there is recognition of the overlap with mental health. National Asylum Support Service: this service provides accommodation and support for asylum seekers (previously the responsibility of local authorities). There is currently very little information about how many asylum seekers are disabled and whether the NASS is meeting their needs (see later). 15

17 Homelessness services: although the majority of people who use homelessness services are not DDA disabled, there is evidence that disabled people are becoming more vulnerable to homelessness. In England, between 1997 and 2003, there was a 44% increase in the number of homeless households in priority need because a household member has a physical [impairment] and a 77% increase in the number of households where the priority need is a household member with a mental illness. The overall increase in the number of households in priority need over the period was 35% (DWP, 2005) 10. A Women s Aid Federation (England) survey reported that disabled women make up 2.4% and disabled children make up just 0.7% of the total women and children accommodated in refuges (Toren, 2005). Yet the Women s Aid Federation also refers to a Home Office study, carried out in the 1990s, which found that disabled women were more likely than nondisabled women to experience domestic violence (Abrahams 2001). There is currently very little information to enable us to judge whether disabled women and children have equal access to domestic violence services. While the Welsh Assembly Government s and the Scottish Executive s national strategies on domestic violence have a specific commitment to ensure that services meet the needs of disabled people, there is not a similar commitment in the equivalent English policy. b. Equality of access between different groups of disabled people. Amongst the services usually referred to as community care services, most users come within the DDA definition of disabled person. Therefore, the equality of access issue is not usually comparative with non-disabled people but between different groups of disabled people. For example: there is evidence that mental health services are not always accessible to people with physical and/or sensory impairments (Morris, 2004), Deaf people (Department of Health, 2002), or people with learning disabilities (Mental Health Foundation, 2002). Here, the discriminatory practice 10 Please note this quote comes from a DWP document provided in confidence and should not be quoted publicly without permission. 16

18 affects people who have an impairment additional to the condition which the service is focussed on. In a survey carried out by the Council for Disabled Children, 75% of CSSRs in England and Wales responded that there are disabled children who are eligible for services but whom they think their services either cannot help or have nothing to offer. Some of these are children who are deemed too disabled for services because of the complexity of their needs (Council for Disabled Children 2004). Here, the discriminatory practice is focussed on level of impairment. Some services for older people have eligibility criteria which exclude people with learning disabilities or mental health needs. Black and minority ethnic disabled adults and children experience unequal access to social care services in comparison with white disabled adults and children (Mir, 2001; Chamba et al, 1999). With examples such as this, public authorities will need to consider possible overlaps with the Race Equality Duty. These overlaps also pose a challenge for the DRC, as discussed later. Asylum seeking disabled people may experience unequal access to mental health services (and indeed to other health and social care services). The British Medical Association highlighted in 2001 that, not only did the physical health of many asylum seekers get worse after they entered Britain but those with mental health support needs are not getting access to relevant support services. For example those suffering from psychological affects of torture are not always referred to specialist centres (BMA, 2001). Here, the discriminatory practice concerns immigration status. c. Equality of access to policies and services that promote independent living. Some social care policies and services are more important than others in terms of enabling participation in society and promoting independent living (see later discussion about how to judge which policies and services promote independent living). It will be important therefore for national and local public authorities to 17

19 monitor the implementation and take up of these policies and services. Some groups of disabled people may experience unequal access to such policies and services and this would be something that could be picked up by the implementation of the Specific Duty. If it appears that some groups are under-represented amongst those benefiting from policies and services which promote independent living, this might be for a number of reasons: the policy itself may not be an appropriate way of delivering independent living for that particular group additional action and/resources may be required in order to implement the policy for that particular group CSSRs may be discriminating against this particular group, albeit unintentionally, in the way they implement the policy. For example, in the implementation of direct payments, social workers working with people with mental health problems may not have the information or confidence to promote direct payments to the people they are working with; the personal assistance support scheme contracted to assist direct payment users may not have the necessary expertise to work with people with learning disabilities The role of social care services in enabling equal access to and participation in society It is not just a question of ensuring equality of access to social care services, but of looking at the role of social care in enabling equal access to and participation in society of disabled people (The Duty to Promote Disability Equality: Statutory Code of Practice, Draft for consultation, Para 1.7: this paragraph is in the draft Codes for both England and Wales, and Scotland). The Specific Duty requires public bodies responsible for social care to examine the extent to which social care policies and practices promote equality of opportunity for disabled people. The requirement to gather information on services and functions and to assess the impact of policies and practices on equality for disabled people has particular implications. The DWP envisages that certain Secretaries of State should report on progress towards equality for disabled people across 18

20 their sphere of influence (DWP, 2004, para. 6.8). As we can see from the list of government departments given above, there are a number of Secretaries of State, Scottish Ministers and Assembly Ministers who are concerned with social care in England, Scotland and Wales. The DED applies not only to current and future policies and practices but public bodies will also need to look at the impact of past decisions: Not only must authorities have due regard to disability equality when making decisions in the future, but they will also need to take action to tackle the consequences of poor quality decisions in the past (Draft Code of Practice, para 1.9). This has particular implications for social care organisations. For example, past decisions about how to respond to people who have high levels of, and/or multiple, needs mean that a lot of existing resources are tied up in institutional care. CSSRs are often unable to develop local services to meet the needs of children and adults with high levels of needs because they would require additional funding and they cannot easily free up resources tied up in existing placements. Some English local authorities have pressed the DH and Dfes for additional short-term funding to enable the development of local services. Redressing the impact of past decisions may well require central and local government to work together on agreed priorities: this will therefore need to be reflected in both government departments and local authorities Disability Equality Schemes. In some cases, past decisions have created unintended inequalities which require changes to policy or regulation to address them. For example: While earned income is not taken into account when charging for community care services, direct payments or ILF grants received by disabled people living in their own homes, this is not the case for people living in residential care. This means that those living in residential care experience a major financial disincentive to taking up paid employment. Such inequality is an unintended consequence of an assumption that people in residential homes are unlikely to be engaged in paid employment. While this is generally true the Prime Minister s Strategy Unit received evidence when carrying out its work for Improving Life Chances of Disabled 19

21 People - that there are some people in residential homes who do wish to work. Assistance with carrying out parenting tasks is specifically excluded from the remit of the Independent Living Fund (which operates across the United Kingdom) by its Trust Deed. This is an anomaly which, it has been argued, creates unequal opportunities for disabled parents with high level support needs. 2. Identify how the duties can complement and build on gaps in current legislation, policy and guidance in England, Scotland and Wales relevant to the provision of social care support, to deliver on promoting disability equality and Independent Living for disabled people. 2.1 Disability equality, independent living and social inclusion The goals of disability equality and independent living are integrally linked to definitions of social inclusion and social exclusion. Social exclusion has been defined as follows: An individual is socially excluded if (a) he or she is geographically resident in a society and (b) he or she does not participate in the normal activities of citizens in that society. (Burchardt et al 1999, p.230). If disability equality and independent living were to be achieved, disabled people would experience equality of opportunity in terms of access to the normal activities referred to above. These normal activities are: to have a reasonable standard of living, to possess a degree of security, to be engaged in an activity which is valued by others, to have some decision-making power, and to be able to draw support from immediate family, friends and a wider community (Burchardt et al, 1999, p. 231). For some, though not all, disabled people, social care services are key to bringing about equality of access to these normal activities. It is against this that social care services must therefore be measured. 20

22 2.2 In what ways does the social care system currently fall short in terms of delivering disability equality and independent living? A number of factors mean that social care resources are often used, not to access normal activities but to maintain and create dependency. Needs are therefore met in ways that result in social exclusion. These factors can be summarised as: An inadequate legislative and policy framework, which: places duties on CSSRs to provide services, rather than gives rights to support or to live in one s own home does not adequately cover the full range of assistance to engage in normal activities contains no entitlement to advocacy or supported decision-making 11. Financial pressures: current resources are often tied up in service provision that creates and maintains dependency. For example, local education and social services authorities in England find it difficult to develop local services to meet the needs of disabled children with high levels of support needs because large sums of money are tied up in out of authority placements (see Abbott et al, 2003). It is unclear as to whether an overall increase in resources is required but existing financial structures make it difficult to invest in independent/inclusive living. Attitudes: Policy and practice on social care is often based on negative assumptions about risk and capacity, which work against the principles of extending choice and control. Basically, disabled people who use support services are seen as vulnerable people needing to be cared for, rather than citizens facing practical barriers to participation and inclusion (Zarb, 2004). Such attitudes are particularly apparent in the consultation paper recently issued by the Scottish Executive which defines anyone in receipt of community care services as vulnerable 11 There is some limited entitlement to advocacy in certain situations across England, Wales and Scotland but disability organisations have argued that a more comprehensive entitlement is required, as set out in the Disabled Persons Act 1986 but not implemented. 21

23 (Scottish Executive 2005) and by the renaming of the Community Care Unit as the Vulnerable Adults Unit. For a full discussion of the barriers to independent living within the current social care system, please see my earlier report for the DRC, Barriers to Independent Living: A scoping paper, written in June 2003, and also Chapter 4 of Improving Life Chances. Apart from the main three issues listed above, some of the detailed barriers are: Assessments which are service-led rather than needs-led Some support needs remain unmet, or inadequately met, in particular: low level or preventative support needs; communication needs; support to take up or remain in employment; support to carry out parenting tasks; needs associated with invasive procedures ; support for young disabled people to leave the parental home Custom and practice leads to denial of independent living by default: e.g. where a move into residential care is seen as final and permanent decision Local variations in policies and practices which support independent living, particularly in the take-up of, and support to use, direct payments and ILF grants Fragmentation of support needs across different sources of funding Poor quality services which institutionalise people The pay and conditions of support workers Inadequate access to information, advice and advocacy. 2.3 How could the DED complement and build on the gaps in the current social care framework The underlying problem is that, within the existing framework, there is no requirement that public bodies use their resources to promote normal activities which are key to independent living and social inclusion. The Disability Equality Duty could potentially redress this situation. If policies and practices are to promote independent living they need to be informed and underpinned by a clear understanding of the social model of disability and its implications for social care. The DRC has a clear role in promoting such an understanding in the context of the implementation of the Disability Equality Duty. 22

24 Key to the application of social model of disability to social care is the recognition that: Disabled people have additional requirements which stem both from experiences of impairment and from the disabling barriers of negative attitudes and unequal access If disabled people are to have equality of opportunity with non-disabled people these additional requirements must be met in ways that deliver choice and control. The organisations and professions involved in social care do not have a good track record in terms of promoting independent living. Instead, independent living has been struggled for by disabled people and their allies by, for example: Demonstrating that direct payments work Developing and delivering training programmes for social care staff which promote the social model of disability and independent living Campaigning for mental health resources to be used in ways which are more flexible and personalised, and less coercive and institutionalised Developing new ways of using resources to promote selfdirected support with people with learning disabilities. Older people have been less active in terms of influencing change in the social care system (their resources have tended to be more focussed in other areas such as pensions). However, older people give similar importance to choice and control over the support needed as younger disabled people do: choice, control and self sufficiency were central to older people s perceptions of independence. Although good health, the ability to maintain personal mobility and being able to live in your own home were commonly associated with being independent, independence was only felt to have been lost if you were unable to exercise control and choice over key aspects of daily living (Parry et al, 2004, p.1) In assisting public bodies responsible for social care to carry out their Disability Equality Duty, therefore, the DRC will need to ask three fundamental questions of their policies, procedures and practices: 23

25 Have disabled people been involved in the formulation of policies and procedures (including those policies and procedures not specifically aimed at disabled people)? Are they involved in monitoring practice? Do policies, procedures and practices deliver choice and control for disabled people? Do policies, procedures and practices enable disabled people to engage in normal activities (as defined above)? Some examples of how the DRC might assist public bodies to address these barriers are given in both the next and in the final section of this paper (Section 6), when we discuss some priority areas for the DRC to focus on. 3. Identify positive examples of what the duties might mean in practice for different public authorities and Local Authorities with Social Services responsibilities in particular. A few local authorities in England have developed Disability Action Plans as part of implementing the Equality Standard for Local Government and sometimes this covers social care services. For example, Manchester City Council s Children, Families and Social Care Department published a Disability Action Plan and have also recently published details re progress (see Such initiatives may provide a starting point for Disability Equality Schemes (although see Section 5.1 below for caveat) Duty to Proactively eliminate discriminatory practices, policies and procedures (see also examples under 3.3 and 3.6 below) Equal access to safeguarding services There is a great deal of evidence that disabled children are not provided with equal access to safeguarding from the recognition of abuse all the way through to investigation and prosecution of perpetrators (see NSPCC, 2003). One Area Child Protection Committee found that an investigation involving Deaf 12 children was hampered by a lack of clarity about 12 The term Deaf is used here to cultural/linguistic status. 24

26 who would be responsible for paying BSL interpreters. There was also uncertainty about the children s levels of understanding. Subsequently, a protocol was drawn up and agreed by the members of ACPC on responsibilities for funding and provision of communication advice and assistance. Some work was also done on identifying experienced interpreters who could assist with investigations in the future. (NB ACPCs are multi-agency bodies, with Councils with Social Services Responsibilities having lead responsibility. ACPCs are to be replaced in April 2006 by Local Safeguarding Children Boards but CSSRs will retain lead responsibility). Unequal access to Child and Adolescent Mental Health Services Children with learning disabilities are more likely to experience mental health problems than children without learning disabilities (about 40% have a diagnosable mental disorder ) yet only a third of NHS Child and Adolescent Mental Health Services (CAMHS) provide specific services for children and adolescents with learning disabilities (Dfes, 2004, para 7.6). A survey in Manchester, for example, found significant levels of unmet mental health needs amongst children with learning disabilities, particularly those who also had communication difficulties and/or visual impairments. Specialised services only reached a minority of these children (Emerson and Robertson 2002). The Department for Education and Skills, and the Welsh Assembly, have recognised that the low level of resources available to children and their families represents serious inequity and a significant challenge for the development of appropriate services (Department for Education and Skills, 2004, para 7.6; Welsh Assembly Government 2004, p.86). The English NSF recognised that children and young people with learning disabilities need to have access to appropriate mental health services to ensure that they are not disadvantaged because of their disability (Dfes, 2004, para. 7.7). The Welsh NSF stated that It is not acceptable to exclude any child from receiving a service because of their IQ (Welsh Assembly Government, 2004, p.87). This is an example of government departments attempting to address unequal access to services, through their function of setting the national framework and standards for service delivery. 25

27 Unequal equal access to day services The example given below relates to unequal access experienced by black and minority ethnic disabled people. Again, there is a lot of evidence of this but the example does raise the issue of the overlap between the DED and Race Equality Duty. Liverpool s Supported Living service aware that there was a very low take up of its day services by black and minority ethnic people with learning disabilities appointed outreach workers to make contact with potential users of day services within these communities, draw up a Person Centred Plan, and broker a package to meet their need. Contact: Natalie Markham, Project Manager, Integrated Services in Neighbourhoods Supported Living Portfolio. Natalie.Markham@liverpool.gov.uk Increasing access to domestic violence services Leeds Inter-Agency Project has been working with agencies in Leeds for over 6 years to improve the services and community support offered to disabled women who are experiencing violence from the men they know. The partner agencies are Leeds Community Safety Partnership, Leeds Drug Action Team and Leeds Youth Offending Service. The project delivers education programmes, one to one support, and accessible information, and has produced a video and training pack ( Duty to ensure equal access to and participation in society of disabled people See also 3.3 and 3.6 below. Developing social care strategies to promote independent living Essex Social Services Equal Lives Strategy was written following a two-stage wide-ranging consultation with people with physical and/or sensory impairments, voluntary organisations and carers. The strategy supports the concept of independent living in which choice and control rests with the disabled person..by implementing this strategy, Essex Social Services will: Work to the principles outlined in the social model of disability Transfer control and choice to disabled people 26

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